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Friday, June 20, 2014

I've added another member to my team. This member I think might make her way to Captain in no time at all. She is a Naturopath Doctor with a gentle soul and is willing to take me on as a patient. In fact she listened to me for 1.5 hours. Yup, I'll repeat that, a Doctor who was actually interested in what I had to say about MY body for an hour and a half. Did I have to pay out of pocket, you betcha, but I got what I paid for and then some. The appointment itself was difficult as it's the first time I attended a medical appointment alone. Normally I have T Jay there to add the missing pieces. Instead I was jumping around, mixing up dates and time lines but she was very understanding. I was exhausted, my brain taxed beyond it's limits but I pushed through it, as after all, I should be the expert on my own body. I was beaming the rest of Wednesday, someone actually listened to me, I couldn't wait to tell T Jay all about it. As I was cutting celery to put in our salad for dinner that familiar feeling of the burning neck, and then the dancing aura that is ohh so familiar with what I now call "pre brain surgery" migraines. Zack you are now on making salad dressing duty, Haley take care of the rice, I have to close my eyes.

I should have known as that afternoon my Trigeminal Neuralgia was acting up. I knew that it was information overload. I explained to her my filing cabinet theory on how brain surgery just dumps your well organized life and memories out all over your skull floor and how hard I've worked to pain stakenly refile each little piece of paper. (It was actually very evident to me that my files are still very mixed up when I had to do it alone, T Jay has become an excellent secretary)

I see my new Neurologist in two weeks and hopefully he is as open to listening as the latest member was. Funny thing about traditional medicine, it's never really clear on who's appointment it is. My appointment explaining my issues and asking for help or their appointment telling you how it really is. It's a weird line there I'm learning. Either way, each day is a new one in this journey of healing. There will be good days and then there will be great days.

Monday, June 16, 2014

There is good news, great news and crappy news and It's taken me a bit to process it all.

I thought that an update was due. Do you remember that old saying when we were kids 1, 2 skip a few, 99, 100? Well this update will be very similar to that, several things have happened in-between all of this but it will be left unsaid, so the Cole's notes are as follows:

The good news: The MRI showed no growth on the tumour. Hooray!!! So at the moment Honeycomb is just hanging out, he is still reeking havoc on my head and body, but he has not grown. I'll take that.

The great news: radiation has been put on hold. To be honest that scared me more then brain surgery, at least with brain surgery I was asleep. Since the tumour is stable, we are going to wait to radiate.

The crappy news: radiation is not quite what I imagined it to be. My thought process was that they would radiate the tumour, it would shrink and poof it would disappear. I would feel better and life would get back to normal. Nope, that is not the case for me. My tumour is in a crappy location, we already know this. However, from what I understand, radiating Honeycomb is kind of a one shot deal. We don't really want to radiate that part of the brain more then once. Radiation can affect surrounding good brain tissue (Good Lord we don't want that). Radiation doesn't "last" forever.

So at the moment we are buying time. The longer the tumour stays stable the more time I get before radiation has to be done. Here is a completely made up scenario: they radiate at the age of lets say 45 and radiation only keeps the tumour quiet for 10 years, then what in the heck am I going to do at 55? See where we are going with this?

A neurologist is my next stop and I'm also adding a Naturopath Doctor as well. Adding people to help me buy time can only be a good thing.